Learning the full impact of migraine through patient voices: A qualitative study.

OBJECTIVE: To better characterize the ways that migraine affects multiple domains of life. BACKGROUND: Further understanding of migraine burden is needed. METHODS: Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach. RESULTS: Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties. CONCLUSIONS: Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.

Developing a Peer-to-Peer mHealth Application to Connect Hispanic Cancer Patients.

Cancer and its treatment can significantly impact health-related quality of life (HRQOL) (J Pain Symptom Manag 9 (3):186-192, 1994; Soc Sci Med 46:1569-1584, 1998), particularly for Hispanics (Healthcare Financ Rev 29 (4):23-40, 2008; Psycho-Oncology 21 (2):115-124, 2012). Moreover, providers of cancer support for this population may encounter unique challenges. Grounded in social capital theory, this study identified Spanish-speaking, Hispanic breast cancer survivor support needs and preferences for a mHealth intervention. A user-centered, community-engaged research design was employed, consisting of focus groups made up of constituents from a local Hispanic-serving, cancer support organization. Focus group audio-recordings, translated into English, were coded using a grounded theory analytic approach. First, lead researchers read the complete transcripts to obtain a general sense of the discussion. Next, coding rules were established (e.g., code at the most granular level; double and triple code if necessary, code exhaustively) and initial codebook was created through open-coding. Three new coders were trained to establish requisite kappa statistic levels (≥.70) for inter-rater reliability. With training and discussion, kappa estimates reached .81-.88. Focus group (n = 31) results revealed a mHealth intervention targeting Hispanic cancer patients should not only offer information and support on disease/treatment effects but also respond to the individual's HRQOL, particularly emotional and social challenges. Specifically, participants expressed a strong desire for Spanish content and to connect with others who had gone through a similar experience. Overall, participants indicated they would have access to and would use such an intervention. Findings indicate positive support for a mHealth tool, which is culturally tailored to Spanish speakers, is available in Spanish, and connects cancer patients with survivors.

Usability and Preliminary Efficacy of an Adaptive Supportive Care System for Patients With Cancer: Pilot Randomized Controlled Trial.

BACKGROUND: Using an iterative user-centered design process, our team developed a patient-centered adaptive supportive care system, PatientCareAnywhere, that provides comprehensive biopsychosocial screening and supportive cancer care to patients across the continuum of care adaptively. The overarching goal of PatientCareAnywhere is to improve health-related quality of life (HRQOL) and self-efficacy of patients with cancer by empowering them with self-management skills and bringing cancer care support directly to them at home. Such support is adaptive to the patient's needs and health status and coordinated across multiple sources in the forms of referrals, education, engagement of community resources, and secure social communication. OBJECTIVE: This study aims to assess the usability of the new web-based PatientCareAnywhere system and examine the preliminary efficacy of PatientCareAnywhere to improve patient-reported outcomes compared with usual care. METHODS: For phase 1, usability testing participants included patients with cancer (n=4) and caregivers (n=7) who evaluated the software prototype and provided qualitative (eg, interviews) and quantitative (eg, System Usability Scale) feedback. For phase 2, participants in the 3-month pilot randomized controlled trial were randomized to receive the PatientCareAnywhere intervention (n=36) or usual care control condition (n=36). HRQOL and cancer-relevant self-efficacy were assessed at baseline (preintervention assessment) and 12 weeks from baseline (postintervention assessment); mean differences between pre- and postintervention scores were compared between the 2 groups. RESULTS: Participants were highly satisfied with the prototype and reported above-average acceptable usability, with a mean System Usability Scale score of 84.09 (SD 10.02). Qualitative data supported the overall usability and perceived usefulness of the intervention, with a few design features (eg, "help request" function) added based on participant feedback. With regard to the randomized controlled trial, patients in the intervention group reported significant improvements in HRQOL from pre- to postintervention scores (mean difference 6.08, SD 15.26) compared with the control group (mean difference -2.95, SD 10.63; P=.01). In contrast, there was no significant between-group difference in self-efficacy (P=.09). CONCLUSIONS: Overall, PatientCareAnywhere represents a user-friendly, functional, and acceptable supportive care intervention with preliminary efficacy to improve HRQOL among patients diagnosed with cancer. Future studies are needed to further establish the efficacy of PatientCareAnywhere as well as explore strategies to enhance user engagement and investigate the optimal intensity, frequency, and use of the intervention to improve patient outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT02408406; https://clinicaltrials.gov/study/NCT02408406.

A technical solution to improving palliative and hospice care.

PURPOSE: This project sought to help palliative and hospice care practices improve patient care quality and operational efficiency by improving patient symptom status reporting and symptom management, reducing associated provider documentation workload, and enhancing patient-provider and provider-provider communication. We developed a user-friendly, electronic medical record-compatible, software prototype that allows typical clinical data and patient-reported outcomes (PRO) to be entered and stored. This data is immediately available during the clinical encounter with graphically depicted summaries for patient history and PRO assessments, a trending feature that links symptom behavior to interventions and the Edmonton Labeled Visual Information System. METHODS: A user-centered design approach allowed for iterative cycles of needs/usability feedback from providers and patients/caregivers to be incorporated into the development of our prototype's technical structure and features. To determine the needs and initial usability of the project's prototype, we interviewed eight providers and 18 patients/caregivers. Another usability test, consisting of patient/caregiver (n = 18) and provider (n = 9) interviews, assessed the functioning prototype's design, usability, and usefulness. RESULTS: Patients/caregivers (n = 18) reported that the prototype was usable (100%), it would facilitate patient-provider communication, shared decision making, and self-management (100%), and they would be willing to try the system and recommend it to their providers (100%). The providers (n = 9) felt that the prototype encouraged better use of patient assessments in decision making and patient care (100%) and improved identification of cause/temporal relationship between care events and outcomes (100%), monitoring of patient status (100%), communication in a multi-disciplinary team (100%), and operational efficiency and patient care quality (88.9%). CONCLUSIONS: Quality of patient care and operational efficiency can be improved with an effective assessment, evaluation, and communication tool. This project developed an electronic version of such a tool. Future efforts will hone its usability and integration across multiple hospice/palliative care settings.

An Innovative Electronic Health Toolkit (Our Whole Lives for Chronic Pain) to Reduce Chronic Pain in Patients With Health Disparities: Open Clinical Trial.

BACKGROUND: Chronic pain affects millions of Americans. Our Whole Lives, an electronic health (eHealth) toolkit for Chronic Pain (Our Whole Lives for Chronic Pain [OWLCP]), is a mind-body chronic pain management platform that teaches self-management strategies to reduce pain impact and pain medication use. OBJECTIVE: The primary goal of this study was to evaluate the feasibility of OWLCP in reducing pain impact and pain-related outcomes. METHODS: We conducted a pre-post clinical study (2 cohorts) to assess the feasibility of OWLCP usage among low-income patients with chronic pain. Outcome data, collected at baseline and 9 weeks, included Patient-Reported Outcomes Measurement Information System (PROMIS-29), pain self-efficacy, and pain medication use. In the statistical analysis, we used descriptive statistics, logistic regression, linear regression, and qualitative methods. RESULTS: Among the enrolled 43 participants, the average age was 50 years, (39/43) 91% were female, (16/43) 37% were black, and (7/43) 16% were Hispanic. From baseline to follow-up, the PROMIS measures showed a reduction in depression (P=.02), pain interference (P=.003), and average pain impact score (P=.007). Pain self-efficacy increased ((P<.001), whereas opioid use had a 13% reduction (P=.03). CONCLUSIONS: The eHealth chronic pain management platform, OWLCP, is a potential tool to reduce the impact of chronic pain for low-income racially diverse populations.